Real consumer and carer participation in the planning and delivery of mental health care is a
central feature of relapse prevention. Consumers and their families and carers must be the
driving force behind the reform of continuing care through the development and
implementation of relapse prevention plans and the service responses that support them.
Participation must occur at all levels, which means that consumers, supported by their
families and carers, must be actively involved not only in the planning and evaluation of
services, but also in the planning of their own treatment and continuing care.
People with mental illness require information and support to enable them to accept and
understand their health condition. This information needs to support people to effectively
self-manage their mental health, make health care choices, and interact with a variety of
services to obtain the clinical and psychosocial support they need. Families and carers require
similar information. This means having easily accessible information about mental health,
mental illness, and illness management that is available in a diversity of developmentally and
culturally appropriate formats. Particularly important in the context of relapse prevention, is
understanding early warning signs and the risk and protective factors for ongoing wellbeing.
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While ‘expert’ information is relevant, peer support is critical for many people coming to
terms with living with a mental illness. Peer support, for both consumers and their families
and carers, can provide essential information, fellowship, role models, mentors and
advocates.
Consumers need to become skilled in participating in their own continuing care and ensuring
that appropriate service supports are put in place for them. They need to expect that
continuing care plans, which incorporate relapse prevention within a recovery focus, will be a
routine component of mental health care. The input of consumers and their families and
carers to these plans must be recognised as fundamental and thereby legitimised and actively
engaged. Plans need to be developed in a timely manner through true partnerships, and the
information shared as appropriate and agreed to by the consumer.
Plans must be supported and developed at a number of levels. In-patient mental health
services must negotiate effective discharge plans with consumers, their families and carers, as
well as with the health and psychosocial support services the consumer will require in the
community. Mental health services, more generally, need to support the development of
relapse and wellness plans that are reviewed at regular intervals and driven by the changing
needs of the consumer.
Crisis plans may also need to be developed depending on the nature of a person’s mental
illness; in some jurisdictions these have been incorporated in the form of Advance
Agreements, which set out the consumer’s choices for care and treatment if he or she
becomes acutely unwell and unable to make decisions at the time. Advance Agreements are a
mental health adaptation of Advance Directives, which are also referred to as ‘Ulysses
agreements’ or ‘living wills’. Advance Directives typically apply in palliative care contexts,
being a document that is created when a person is well that defines the medical treatment the
person wishes to refuse should they become so unwell that they are unable to refuse consent
to treatment. They developed in response to technological advances that can keep people
alive and are a witnessed document that is legally binding in some jurisdictions.
There is also need for plans that support and enhance the capacity of people to self-manage
on a daily basis and for the longer-term. Plans need to cover daily wellness needs, such as
using behavioural tailoring to ensure effective medication use and mapping out daily wellness
needs in terms of exercise, nutrition, sleep and social activities. Longer-term plans also need
to be made to set out goals that support recovery.
The development of illness management techniques that empower consumers and facilitate
communication between consumers and service providers must be prioritised and
encouraged. Approaches such as the Expert Patient Program4 have been developed in the
United Kingdom to help people with long-term health conditions to be better able to selfmanage
their health needs.
Collaborative Therapy is a comprehensive therapeutic framework that provides a tool for
empowering consumers and enhancing communication between consumers and services
(Castle & Gilbert 2003a,b). It enables consumers, clinicians and other services to work
systematically and collaboratively toward optimal mental health outcomes. The approach
prioritises consumer participation and continuous improvement. An important component is
the Collaborative Treatment Journal, which is a small pocket journal held by the consumer
that can be used to chart stressors, early warning signs, supports, and other factors that
influence the course and management of their mental health. The journal places the consumer
4 See http://www.expertpatients.nhs.uk/ (Accessed 11 April 2005)
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at the centre of their recovery by facilitating communication between themself and the other
people and services involved in their continuing care. Randomised controlled trials of
Collaborative Therapy are taking place in Victoria, ACT and South Australia (see Gilbert et
al 2003). This approach is congruent with 4As, and provides a promising model that can be
used to implement relapse prevention within continuing care models for people seriously
affected by mental illness.
It is vital that the role of families and carers in relapse prevention be recognised and
supported. Family support is essential to preventing relapse and the needs of families, and
especially of the children of people with mental illness, must be acknowledged and services
put in place to enhance their ability to support consumers while protecting their own
wellbeing. Initiatives to include families and carers in treatment and relapse planning are
essential. Support and training, for example in recognition of early warning signs, is also
important for families and carers. Mental health services must become more responsive to the
needs and concerns of families and carers as they often are the first to realise when early
intervention needs to take place.
Service access and responsiveness
Relapse prevention is based on the availability of timely and appropriate service responses
from diverse service sectors. This requires appropriate supply, organisation, deployment,
education and training of the mental health workforce. Firstly, the distribution and
composition of the mental health workforce has to be responsive to population needs for
continuing support, and innovative solutions to encourage greater supply and equity of access
must be developed. In most jurisdictions, and almost universally in rural and remote areas,
the capacity of both clinical and community support services needs to be increased.
Fundamentally, mental health care services need to be able to respond outside acute and crisis
situations. This calls for a different type of service response, with a lower threshold of service
need required to enable people to get an effective response when they are experiencing their
early warning signs. A wider range of service responses and varying levels of care are
required – from acute inpatient care to a range of supported accommodation options, as well
as support for self-management within the community.
When you pick up early warning symptoms … people need to be back in the system, but not
back in the acute end. —Clinician
Early intervention has been recognised as a function of the mental health care system that
requires innovation and action. Early intervention requires a mental health care system geared
toward acting quickly and effectively, with minimal invasiveness and in a non-stigmatising
manner, recognising the rights and needs of consumers and their families and carers. Primary
care, and general practice in particular, are fundamental to effective early intervention by
being in a position to recognise changes in the mental health status of consumers and
ensuring that there is an appropriate and agreed service response. This requires strong
partnerships with specialist mental health services who must respond when primary care
services identify a need. Many jurisdictions have Memorandums of Understanding between
their Divisions of General Practice and public mental health services and these linkages are
constantly being developed and improved. However, in many jurisdictions there is still some
way to go to achieve the type of early intervention responses that are required.
The strengths of the specialist mental health, primary care and psychiatric disability sectors
need to be brought together and, while retaining their distinctiveness, recognise and enhance
their synergy. This would encourage true partnerships to develop, thereby enabling seamless
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transitions from acute care to follow-up and support services, and back to acute care if
necessary.
The issue is around return pathways. We need a semi-permeable membrane, a lower
threshold back into a higher level of care. —Clinician
Relapse prevention needs to commence in the treatment phase of the first episode and be
ongoing, possibly for the entirety of a person’s life. Delivering mental health care that is
responsive to the many, diverse and changing long-term needs of consumers and their
families and carers, requires working within complex systems of service delivery. This means
developing models of integrated care, whereby innovative funding and service delivery
methods support the coordination and delivery of continuity of care across episodes of illness,
across the lifespan, and across services and sectors. This is a challenging task necessitating
expanding service frameworks within and beyond the health system, to incorporate mental
health and primary care, as well as disability, accommodation and welfare services, and
education, employment and other sectors that impact on the recovery of people with mental
illness. Models of these expanded and integrated frameworks are being developed in some
areas and these approaches need to be encouraged and more widely adopted.
Inequities regarding access to some of the support services that are essential to recovery and
impact on risk of relapse must be eliminated; in particular, access to disability services,
accommodation, and domiciliary care need attention, but also access to employment,
education and training, and income support. It is essential that barriers to support services and
all discriminatory practices that restrict access for people with mental illness be removed.
There is need for more outreach and assertive community treatment options, particularly to
reach people who are socially and economically disadvantaged, such as homeless people with
mental illness and those with complex comorbidities, such as harmful alcohol or other drug
use. Strong partnerships are essential and effective partnership models are beginning to
evolve in some areas, particularly between mental health, drug and alcohol, and
accommodation services. However, further development of partnership models is required,
along with ways to sustain and embed partnerships as standard practice.
They are assertive outreach staff – they don’t take referrals, they find people, their job is to
link people with existing services. 80% of their target group are people with a serious mental
illness who are in caravan parks and rooming houses and such like. We also have outposted
to work with those people an RDNS nurse, so the three of them go out. For a while we also
had a mental health clinician, so it was a team of four people. They would just visit people
and say ‘how are you going’ and make sure they were ok. The nurse got to see they were ok,
the clinician got to see they were ok, the two linkage people made sure they were getting the
supports – the generic mainstream supports from the community that they needed. It worked
really well, it was a great model. I think it had a big impact on people who were isolated and
people didn’t have to exhibit relapse signs, severe signs, before they got support.
—Psychosocial rehabilitation service provider
It is important to recognise the role of the community sector, and non-government
organisations in particular, which are a major source of continuing care and support for
people in the community. In most jurisdictions, services that impact on the risk and protective
factors for relapse and that provide accommodation, psychiatric rehabilitation, and support
services to consumers and their families and carers, are provided mostly by the nongovernment
sector. However, while the demands on non-government organisations have
increased significantly over the past decade, their funding base remains limited. This inequity
needs to be addressed if these organisations are to have the resource base that enables them to
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effectively provide services for consumers and carers. Access to psychosocial and psychiatric
rehabilitation services will be facilitated by better resourcing and improved coordination and
integration. Considerable effort needs to be applied to building up the community support and
non-government sector to enable these services to meet levels of population need and to be
integrated within a broader and more comprehensive mental health care framework that is
easier for consumers, their families and carers, and services providers to access.
Workforce development
Positive attitudes, hope and expectations of recovery need to prevail within all the services
provided for people with mental illness. This requires eliminating stigmatising attitudes and
practices, and education of the many and varied workforces that provide clinical and
psychosocial services. All service providers need to maintain a positive attitude toward
people with mental illness, and their families and carers, and this will require innovative work
and training practices that enable the mental health workforce to develop and maintain an
optimistic approach to treating and supporting people who have been seriously affected by
mental illness. Two innovations in this regard are peer consultants to acute and clinical
services who provide positive role models of people coping well with mental illness, and the
rotation of staff through different service settings, particularly acute care staff into
community settings, so that they have opportunities to see people coping effectively in the
community.
One of the things they need to do is to rotate nursing staff through acute wards, community
and NGOs. Then they get to see people who aren’t sick all the time. They won’t get those
negative impressions. —Consumer
Workforce development also needs to focus on supporting a more holistic and comprehensive
approach to mental health care that emphasises a bio-psycho-social understanding of mental
health (see Engel 1980), recognising that the factors that affect mental health and mental
illness occur in biological, psychological and social domains. This means an emphasis on
updating the knowledge and skills of service providers, as well as increasing their ability to
work within partnership models and systems of integrated care.
Mental health services must reorient to routinely work within frameworks that not only aim
to reduce the clinical manifestations of illness, but that support the empowerment of
consumers and encourage personal capacity building and support self-management. This will
entail training the diverse components of the mental health care system to interact effectively,
so that specialist mental health services, primary care services, allied health services,
psychosocial services, and inpatient and community services, all recognise each other as
equal partners in the provision of continuing care and communicate effectively with each
other. It also means accepting the central role of consumers and their families and carers, and
being open to innovation and change as new evidence becomes available in this dynamic
field.
I was very lucky, I’ve hit a stroke of luck in this new mental health service and outpatient unit.
A social worker happened to pick up my file and decide to have a look through it and she
could not believe what she saw, she thought, “My god, this person has been in the system for
nearly 20 years and she’s only ever seen a psychiatrist”, and so she got the team together and
said, “Right this woman has really not had any treatment except drugs”. I was so lucky, I felt
really humbled, I got offered a social worker to work with me. What I liked about it was then I
knew what was going to happen, I had this process going. She got me to see this psychologist
who has taken me through a whole lot of stuff – stuff I’d never done before and that has really
helped. —Consumer
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The importance of primary care must be highlighted. As reform of the mental health system
has progressed and mental health care has moved increasingly from institutionalised care to
care within the community, primary care has become an essential community resource:
supplying information about mental health and wellbeing to the general community, meeting
the increasingly complex and diverse mental health care needs of patients, as well as being
the gateway to specialist health care and many allied health services. This is an extremely
demanding role, one that requires a high level of support and continual learning. While there
are many initiatives underway enhancing mental health care within primary care, these need
to be expanded and prioritised to ensure that primary care, including general practice, has the
capacity to fulfil its essential role in continuing care for people seriously affected by mental
illness.
Information: monitoring, evaluation and research
Underpinning the implementation of any intervention or innovation is the need for
information at different levels, and this also applies to relapse prevention. There is, firstly, a
need to be able to identify programs that are related to relapse prevention and to monitor their
uptake and implementation. The effectiveness of relapse prevention programs needs to be
evaluated and their safety and quality monitored. Such monitoring requires high quality
information systems that can generate relevant data in a timely manner. As noted earlier, it is
currently not possible to identify people with psychiatric disabilities in many of the data
collections outside the mainstream health sector, and this limits understanding of the utility of
these services for people with mental illness.
Secondly, the evidence base around the factors that affect relapse needs development. There
is currently little scientific evidence related to the risk and protective factors for relapse and
the efficacy of psychosocial interventions, mainly because there has been little research
interest in the area (see Jorm et al 2001). Such research needs to be encouraged and targeted.
Research funding is a politicised process and advocacy is required from the mental health
community to ensure that when such areas of research need are identified, concerted effort is
applied to ensure that the resources are made available to undertake it.
We need to recognise the imbalance of research. We shouldn’t assume that things that aren’t
well researched are not effective … We’re not going to get research dollars to look at the
efficacy of psychosocial interventions as opposed to medical interventions, because you can’t
sell them. —Clinician
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ISSUES FOR CONSIDERATION
To summarise, the following is a list of possible issues for consideration in order to progress
the implementation of relapse prevention within continuing care for Australia’s mental health
care system.
For people who have been seriously affected by mental illness, the major issues relate to
being empowered to incorporate relapse prevention as a tool within their own journey
of recovery. These issues include:
• having information and support to accept and understand their health condition in ways
that are developmentally and culturally appropriate;
• developing understanding of the following topics:
- early warning signs of relapse, including symptom and reality checks
- risk factors for relapse, including relapse triggers
- protective factors for relapse and wellness needs
- effective clinical services and approaches
- effective psychosocial and psychiatric rehabilitation services
- illness self-management tools;
• being the central force in their own treatment planning and continuing care;
• expecting services to engage them in continuing care planning that is regularly reviewed
and comprises, as appropriate to the individual consumer’s circumstances: discharge
plans from acute and inpatient care; ongoing relapse prevention and wellness plans; crisis
plans; as well as support to develop self-management plans; and
• being fully involved in the planning and evaluation of mental health services and
empowered to advocate for service development and quality improvement.
For the families and carers of people who have been seriously affected by mental illness
many of the issues are similar to those for consumers, but relate more specifically to
their role in supporting the consumer while maintaining their own wellbeing. This
includes:
• having information and support to accept and understand the health condition of the
consumer, and their role in supporting the consumer’s ongoing wellbeing;
• being involved in treatment planning and continuing care as appropriate and agreed by
the consumer;
• ensuring that appropriate continuing care planning takes place and is regularly reviewed
and that their role in this is explicitly acknowledged and negotiated;
• being able to advocate for service development and having their role in the planning and
evaluation of mental health services recognised; and
• having family and carer support services in place to maintain their own wellbeing.
For primary care services, including general practitioners, the major issues are related
to:
• understanding and negotiating their role in the continuing care of a person who has
experienced mental illness, particularly their role in relation to recognition of early
warning signs and agreed early intervention responses;
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• ensuring that the physical health needs of people who have been seriously affected by
mental illness are met;
• providing integrated and seamless continuing care pathways by working in effective
partnership with specialist mental health services, other primary care services, allied
health services, and providers of psychosocial and psychiatric rehabilitation services; and
• being actively involved in discharge planning and continuing care plans.
For case managers, the major issues are:
• coordinating the development of relapse prevention plans in collaboration with consumers
and their families and carers and other relevant parties;
• regularly reviewing plans;
• ensuring that clients receive all the clinical, psychosocial and rehabilitation services they
require to maximise their recovery;
• providing integrated and seamless continuing care pathways by working in effective
partnership with specialist mental health services, primary care including general practice,
allied health services, and providers of psychosocial and psychiatric rehabilitation
services;
• identifying gaps in the services required to prevent relapse and advocating for the
development of these services;
• having positive attitudes that support a recovery orientation; and
• keeping up-to-date with emerging evidence regarding the factors that reduce risk of
relapse and enhance resilience.
For providers of non-clinical psychosocial and psychiatric rehabilitation support
services, the main issues are:
• providing a service response that is able to meet community demand for support services;
• being recognised as an essential component of continuing care, and thereby included in
relapse prevention planning;
• providing integrated and seamless continuing care pathways by working in effective
partnership with specialist mental health services, primary care, allied health services, and
providers of other psychosocial and psychiatric rehabilitation services;
• having positive attitudes that support a recovery orientation;
• training workers to have the appropriate skills and knowledge to provide services that
prevent relapse and support recovery;
• removing any barriers to accessing disability and psychosocial support services for people
with mental illness; and
• developing a more coordinated, comprehensive and integrated set of community and nongovernment
services.
For providers of clinical services, the main issues relate to:
• making relapse prevention a routine component of treatment and continuing care;
• prioritising consumer participation, and that of families and carers if appropriate, in
treatment and relapse prevention planning;
• ensuring continuity of care beyond the acute episode by providing integrated and
seamless continuing care pathways through working in effective partnership with primary
care including general practice, allied health services, and providers of psychosocial and
psychiatric rehabilitation services;
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• implementing effective and comprehensive discharge planning to provide continuity of
care through ensuring that the necessary pathways and appointments for follow-up care
are in place prior to discharge; and
• having positive attitudes that support a recovery orientation.
For service managers, workforce planners, and policy makers the issues relate to
developing a mental health care system that can support relapse prevention initiatives
and provide continuity of care across the course of an episode of illness, across the
lifespan, and across service sectors. This means:
• developing service responses that support early intervention by having a lower threshold
for gaining access to services;
• providing a diverse and appropriate mix of clinical, psychosocial and disability support
services that can meet population needs;
• providing developmentally and culturally appropriate services and ensuring that service
providers are trained in developmentally and culturally appropriate approaches;
• resourcing services, particularly the non-government sector, to a level that enables
capacity to implement relapse prevention initiatives;
• providing outreach and assertive community services to meet the needs of consumers who
are most disadvantaged and least able to access services;
• ensuring that all services work within a recovery orientation and that workers have a
positive attitude toward people with mental illness, as well as their families and carers;
and
• implementing training programs to update workforce skills so that workers in all the
sectors that are involved in continuing care are able to work within integrated care
pathways that prioritise the needs of consumers and their families and carers and are
based on current knowledge of the factors that affect relapse.
Finally, the whole community has a role in preventing relapse. This includes:
• understanding the impact of everyday actions, particularly stigma, on the wellbeing of
people who have experienced mental illness and their families and carers;
• refusing to allow discriminatory practices or stigmatising views of people with mental
illness; and
• becoming more accepting, inclusive and supportive of people with mental illness within
our communities.
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